u/sweetfire009

Connection between CJD and head trauma/CTE
▲ 17 r/CJD

Connection between CJD and head trauma/CTE

My dad recently passed away from probable sporadic CJD at 67. He played football for many years, including high school and college, and our family has long suspected that he developed CTE from that.

I asked the National Prion Disease Pathology Surveillance Center about the connection, and they shared this article with me: https://link.springer.com/article/10.1186/s40478-018-0643-9

The study looked at 55 people with autopsy-confirmed CTE and found 2 who also had sporadic CJD. They also reported a third person identified through the National Prion Center who had both diseases.

Based on the normal incidence of sporadic prion disease, the researchers calculated that they would have expected only about 0.004 cases of prion disease in the group of 55. They calculated the probability of finding 2 or more cases by chance alone at about 9 in a million.

This was a very small study and it absolutely does not establish that CTE or head trauma causes CJD. The authors themselves said a much larger study would be needed. But they concluded that their findings provided preliminary evidence that CTE could potentially be associated with an increased risk of sporadic CJD.

One other interesting finding was that the CJD in these patients looked like typical sporadic CJD at the molecular level. In other words, the prion disease seemed to have developed on top of pre-existing CTE.

It made me really curious about the CJD community more broadly. Did your loved one have a significant history of repetitive head impacts or traumatic brain injuries? Football, hockey, boxing, military service/blast exposure, multiple concussions, serious head injuries, etc.? And if they had an autopsy, was CTE ever evaluated?

u/sweetfire009 — 11 days ago
▲ 19 r/CJD

How much to share with someone who was diagnosed

For those of you with loved ones who were diagnosed early enough that they could potentially understand the diagnosis, did you tell the person? We got the RT quic results back, which says 98% probability. My dad is having trouble with vision and words, but can still follow simple conversations. He’s aware and upset that he’s declining, and has expressed that he wants to do everything possible to get better. We are struggling with how much to share with him. A psychologist we talked to said to keep hope alive since he already seems so depressed, but it seems cruel that he will miss the opportunity to settle his affairs (say goodbye, etc.)

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u/sweetfire009 — 1 month ago